Ichthyosis + appearance diversity resources

Many people ask me for advice on coping with ichthyosis and visible difference. While the experiences I share on my blog may assist you, please keep in mind I am not a medical or psychological professional. Please seek medical advice or counseling before trying any new treatments I've written about.

The products I use for my skin can be found here and here. In brief I use a mixture of 70% white soft paraffin and 30% liquid paraffin (or 60/40 in the cool months) to moisturise, QV Gentle Wash for showers, sulphate free shampoo and conditioner, Zyrtec to stop the allergies (all daily) and panadol for pain and antibiotics when I have infections. I get an authority for my scripts - so I can get large quantities of paraffin at a capped prescription price. Talk to your Australian dermatologist about this.

If you or your child has Ichthyosis, I recommend you book in to see a dermatologist - seek a referral from your GP. There are many forms of Icthyosis and the treatments vary. You may need to see the dermatologist regularly or rarely, depending on the type you or your child has. I also recommend you talk to a counsellor or psychologist if you or child need support to manage the social aspects of Ichthyosis. Your dermatologist will be able to arrange this.

I did a speech about my appearance, which has some advice about resilience. You can view this here. I also met with Jack, a young boy with Ichthyosis, and told him and his parents that it gets better. Here is a piece I wrote on talking to people with a disability, and this blog has tips for talking to children about disability.

And here is my "it gets better" video:

Here are some online resources that you can visit for more advice and contacts. They will be useful if you have Ichthyosis or a visible difference.

Our Young Warrior Evan - written by DeDe, documenting her young son Evan's journey with Harlequin Ichthyosis. She's collated a page of tips, including laundry advice, which is really useful for new parents, or myself who constantly has a broken washing machine seal.

(My broken seal is never as cute as this one. Never. My broken seal leaves me crying in the puddle it's left on the floor.)

Blessed by Brenna - written by Courtney Westlake sharing her daughter Brenna's story of living with Harlequin Ichthyosis.

Changing Faces - UK-based charity giving support and information to people with disfigurements to the face, hands or body, and their families. This tip sheet is a great resource for people who ask what do they say to someone who looks different?.

Centre for Appearance Research - The Centre for Appearance Research (CAR) strives to make a real difference to the lives of the many hundreds of thousands of people with appearance-related concerns both in the United Kingdom and across the world.

Positive Exposure - Positive Exposure utilises photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism. Their educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.

YP Face It - YP Face IT provides support and advice for any young person who has worries or is unhappy because they have an unusual appearance (what we call a visible difference).

Body Gossip - Body Gossip is a positive body image campaign that is working to banish body shame, encouraging everyone to be the best version of themselves and rock their very own brand of gorgeous.

About Face - to promote and enhance emotional and mental well-being of individuals with facial differences and their families through social and peer support, information, educational programs and public awareness. About Faces aims to inspire people with facial differences to find confidence and courage.

Livewire - Livewire.org.au is an online community designed just for young people living with a serious illness, chronic health condition or disability, and their families. It is a safe online space where members can connect and share experiences with others who understand what they are going through.

The Starlight Foundation - Starlight transforms the experience of hospitalisation and treatment for these children by replacing pain, fear, and boredom with fun, joy and laughter.

10 comments:

Thanks for the mention, Carly. This is a great post for affected people worldwide. Two more that should probably be included are ISG in the UK and ENI for the rest of Europe. There's also a Brazilian group that is just getting off the ground, using FIRST as their model.

HI Carly, You dad suggested I check out your site. I had seen photos of you with your dad on FB. We have a common interest in Think-Tasmania.com and both being from the UK.I developed alopecia universalis whilst being given methotrexate for my eczema by a skin specialist 12 months ago. I stopped taking the meds very quickly when my GP saw my hair was falling out. I still take prednisolone for asthma and it also helps my skin calm down, but struggle to use any products on the chemist shelf, including QV, Dove, Neutrogena... the list goes on. Showering is a nightmare. Instant dry itchy skin. The confidence you show is amazing.. . Will keep an eye on your blog and website from now on.

Hi Carly.> Kudos for setting up this Website, for those suffering from Ichthyosis..

>Discovery in 2006 of mutations in the Filaggrin Gene are the cause of Ichthyosis,. Filaggrin Gene mutations also cause Eczema, Asthma, Food Allergy, Allergic Rhinitis, and Anaphylaxis. A lot of Research now being done on this Gene, which gives more hope for people who suffer Ichthyosis.

Carly you are a Very Beautiful Smart Well Spoken Inspirational young woman. I have a rare disease but it is not visable, and sometimes that is also difficlt. It is called Itracranial Hypertension(aka psuedotumor cererbri) it is all the symptoms and more of a brain tumor without actually having a brain tumor. Your brain has fliud built up around it and I have seizures and am at risk for a stroke.I have had 3 brain surgeries. The last one 7 weeks ago. I have no hair right now it is temporary although I have a permanant bald spot..that is not my concern.. I live every day in pain and suffer depression from it. I don't talk about being depressed I put on a happy face for everyone one and try to tell them that I am doing fine. But it gets so hard to do after a while. Some days when I am not recovering from surgery I look okay on the outside... but on the inside the pain gets hard to handle. I give you so much credit for having the courage to be an advocate, and help everyone along your path. Your are Amazing! Best wishes to you,and a lifetime of happiness with your Marriage!

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.